Happy Feast Day of St. Gianna Molla (patron of mothers and unborn children), and National Infertility Awareness Week! I usually only keep this story for in-person sharing or witness talks, but I've been sharing it more than usual lately, so something told me it was time to write it all down...
I
have PCOS. There – I said it. For all the Internet (or the 5 people who
might actually read this) to know.
More
specifically, I have anovulatory insulin-resistant Polycystic Ovarian Syndrome.
And this is [the beginning of] my story.
Before
I get to the short version, you need to know a few things about me, if you
don’t already. I work as a Catholic Campus Minister in Catholic Church, and my
ministry and my crazy college students are a HUGE part of my life. I love the
word “project,” can easily slip into workaholic mode, have a big heart (that
sometimes gets in the way of things), and I can lead a huge room full of people
when I’m teaching, singing at church, etc., but I hate being the center of
attention when the topic of conversation is me. I can be a stubborn pain in the
butt, and may or may not have a tendency to be sarcastic. My sister and I grew
up playing every sport you can enroll your elementary school child in, we spent
high school playing varsity and club sports year round, and our Pilates-teacher-mother
and basketball-coach-dad emphasized that being active was just how our family
was.
What
is PCOS? In super basic terms, Polycystic Ovarian Syndrome is an endocrine
disorder that affects 5-10% of women, and about half of those women are
undiagnosed. A woman with PCOS has it all her life, but it tends to be more of
a problem between the ages of 16-45, when our ovaries are most active. PCOS causes
cysts to grow on ovaries, which can sometimes burst (Yes, OUCH!!), and disrupt
many other parts of a woman’s body – cysts secrete extra hormones, and can
throw off your menstrual cycles, insulin production, body temperature,
metabolism, cause heart problems, effect your overall fertility, and so much
more. There is currently no cure for PCOS – it can only be managed my sometimes
drastic lifestyle changes – and many things can make PCOS worse (like stress,
not eating right, not sleeping enough, etc.). Not only is PCOS widely
undiagnosed, many doctors either don’t know much about it, or feel like the
only way to “fix” PCOS is to go on the birth control pill.
So,
in my elementary and middle school years, life was relatively normal. The
teenage years hit, and my body changed a little, but nothing out of the
ordinary. I was active, at the gym nearly every day for one sport or another, training
to play volleyball in college (thank you, torn rotator cuff, for killing
that dream, but that’s another story for another day). I went off to college six hours from
home, and things were still relatively normal. I probably missed a period here
and there, but not frequently enough to make me think anything of it. I put on
a few pounds here and there, but was still working out, and it had always been
easy for me to build muscle mass (another PCOS symptom), so it didn’t really
catch my attention. And then junior year hit – you know, that supposed pivotal
point in your life where you’re supposed to know exactly what you’re doing with
the rest of your life, because in a year or so you have to start applying for
jobs, grad school, etc. and pretend you know how to adult (my students use that
as a verb now).
In
the midst of all that, I was struggling, and I don’t think I realized the pile
of chaos that was about to turn into a tornado. Classes were great, but I was
starting to have a change of heart about working in the corporate marketing
world, and I didn’t know yet where that need to do something more than make
money was going to take me. The 28392839 clubs and activities I was in were
fine, and the 583 leadership roles I had signed myself up for were running
smoothly – especially on the days where I actually went to bed before 4 a.m.
after squeezing in some homework. Socially, my girlfriends were great, but my
choice in men wasn’t. I became so busy, that a lot of things took a backseat –
my spiritual life, talking to my family, and my health, to name a few.
Everything
was such a blur, and I was too busy being an overachiever, that it wasn’t until
somewhere mid-senior year that I started to take notice of some changes my body
had been going through while I was elbow-deep in to-do lists and coffee cups.
My clothes were starting to fit weird, I was tired ALL the time, frequently
moody, and I couldn’t remember the last time I had needed to buy a new box of
tampons. I chalked it up to stress and lack of sleep and gym time, and pushed
through til graduation.
That
summer, before starting my full-time MBA program (with 2 part time jobs and
some volunteering on the side, because normal people do all of that at the same
time), I finally took the time to go see the OBGYN. I explained that I had been
gaining weight, generally not feeling well, and had only been having 2-3 periods
a year, and I thought something was wrong. They did an ultrasound, didn’t find
anything, and told me I didn’t need to go through any more tests if I wasn’t
sleeping around, and suggested I go on the pill “if it really bothers you that
you’re missing periods.” She wasn’t the first doctor who had tried to put me on
the pill, but it had never sat right with me. I politely declined (again), but
thought it was weird that there was clearly something wrong with my body, but
no one was listening, much less the doctors I had hoped would fix me. I will
always remember how frustrated and unheard I felt after that appointment.
Always.
Fast
forward through 3 semesters of graduate school to complete my MBA, and a year
of working in campus ministry at a nearby college. At this point I was so torn
about what kind of job I wanted to do, or where I wanted to live, that I
applied to tons of different positions – marketing, event planning, non-profit
public relations, youth and campus ministry, and more. In July of 2012, I got
hired by the Archdiocese of Newark to work at Kean University, and little did I
know that this job would introduce me to something that would change my health,
and my life.
Kean’s
Campus Ministry program was in a “rebuilding” phase and very small, so
sometimes we would join other nearby universities for their events. One night,
I took a few girls to Montclair State University for a women’s night, where
they were bringing in a guest speaker to talk about pro-life issues and Natural
Family Planning. I had gotten a brief introduction to NFP in college thanks to
some cool Catholic women, and hadn’t thought much of it since getting married
or having babies wasn’t in my immediate plans – but I was pretty excited to
hear this talk.
That
night I met the first woman who would truly help me on my journey and give me
some hope about my health, Dr. Anne Tobak (now Sheridan). The more Anne spoke
about the female body and how God designed it, the more I saw that there really
was something not quite right with my health, and I wasn’t going crazy. She
talked about how the Creighton model of Natural Family Planning has a medical
branch called NaPro Technology, which uses NFP charting and information to
diagnose and find natural solutions to things like infertility, PCOS,
endometriosis, and more. So many things that night rang true with me, and I
knew I had been given an opportunity that I didn’t know I was looking for –
much less what to call it or how to find it.
I
sneakily took a business card off the info table, not wanting to approach Anne
in front of my students. I procrastinated on reaching out to her for 9 months
(did I mention I’m really good at making myself busy?), until one week in June
2013. I had taken a week off work to go back to Erie and work a week-long
church camp with some good friends from college and the Catholic community
there. It was one of my favorite weeks of the year, and was full of late
nights, junk food, large coffees, and running around until you fell asleep with
a pen in your hand writing notes to the students.
The
one time of the day we stopped moving at lightning speed was for Mass and
Adoration each night after dinner. Usually this was my favorite part of the
day, and a great time to connect with God. But this week something was off. The
first few days, I felt jittery and light-headed, but I chalked it up to too
much coffee and a headache from allergies, and ignored it. By Wednesday, my
body was screaming at me that there was something wrong, and the next thing I
knew, I was on the hallway floor with my head in my friend Kayla’s lap, trying
to stop shaking. I’ll never forget the look on one of my students’ faces that
night, when he came out into the hall to check on me for the 7th time
in 10 minutes, worried that I was going to get worse. I refused to go to the
hospital, but nearly fainted at least three times that week.
When
I got home from camp (thankfully without any incidents on my 6-hour solo drive
back to my new apartment), I realized that I should have gotten my period by
now… but once again, it was off. I wasn’t sure if what had happened at camp was
related to that, but I knew I needed to talk to someone about it, ASAP, to
figure out what the heck my body was doing. I searched through my drafts until
I found the e-mail I had been meaning to send to Anne explaining my symptoms,
and finally pressed send. She replied quickly, and said that from what I had
told her about my cycles and health, it sounded like I had PCOS, and that
Creighton/NaPro Technology would be able to help. I couldn’t believe that this
random woman had an idea of what might be wrong with me, when doctor after
doctor hadn’t seemed to have the slightest idea.
Anne
and I met a week or so later in a small conference room at the local library,
where I had my first official NFP lesson and started to learn to chart my
cycles. Different methods of Natural Family Planning look at different changes
in a women’s body to determine when she is fertile/infertile each day of the
month (some use body temperature, others use urine tests; the Creighton Model
tracks changes in cervical mucus). There is a standardized coding process for
what kind of mucus (or lack thereof) you have each day, and from that
information, a NaPro Technology doctor can diagnose things like ovarian cysts,
failure to ovulate, infections, tendency to miscarry, and more. It’s so cool!
And it’s definitely NOT the “rhythm method” we hear about our grandparents
using.
We
already knew that I would most likely have to see a specialized NaPro doctor,
and luckily there were a small handful of them within an hour or two drive.
Before meeting with a NaPro doctor, you need to chart for at least 3 months so
they have some concrete information to help diagnose things with – so my
learning curve and waiting game began. After I felt comfortable learning the
charting system, and Anne and I went over some of the signs on my chart that pointed
towards PCOS, I made an appointment with Dr. Jean Golden-Tevald. PCOS can only
be truly diagnosed by having an ultrasound and doing bloodwork, and I needed to
know if it was official.
The
4 months between my first meeting with Anne and seeing Dr. Jean gave me plenty
of time to Google PCOS many times. I had read a lot about it by then – the
symptoms I didn’t have (or at least hadn’t developed yet). The ones I
definitely did have. What a cyst does when it ruptures (which is just as NOT
FUN as it sounds). The increased risk of things like heart disease, diabetes,
and cancer. The increased rate of miscarriage. Infertility. I knew it was
coming, but I wasn’t sure if I would be relieved to finally have an answer to
all of my questions, or broken-hearted that this would finally be it. Or both.
Dr.
Jean and her staff were great. I walked into the waiting room on October 1 (the
feast of St. Therese of Lisieux, one of my favorite saints) and saw a tapestry
with our Lady of Guadalupe behind the secretary’s desk, some pro-life awards
from the local bishop hanging on the wall, and I knew that if nothing else, I’d
be in good hands here. I met Dr. Jean, and was immediately comfortable – she
told me everything like it was, but in the most pastoral and caring way possible.
What?! Another person who actually was
going to listen when I told them something was wrong with my body?
We
talked about PCOS, some all-natural vitamins that could help with the
never-ending mood swings and slew of other symptoms, and she led me back into
the ultrasound room. Another woman was there in training, and she asked to see
my Creighton chart before we got started. I wasn’t expecting the “WOAH… I’ve
never seen anything like this before!” that slipped out of her mouth before she
regained her composure and explained how the ultrasound setup worked. A few
minutes later, I was covered in ultrasound goo, and hearing the words I had
been expecting all day – “Well, there they are… your ovaries are definitely
covered in cysts.”
I
don’t remember much else of the rest of the visit besides scheduling a follow
up in a few months after I had some more charting under my belt and the results
of my full bloodwork panel came back. I had a 45-minute drive back to work
(because normal people go back to work after getting bad news from their doctor,
right?), and it didn’t take long for the tears to come as I started to process
what today meant. I mean, I wasn’t dying. But a small part of me felt like I
was – the part of me that had a huge smile when my friends joked that it wasn’t
a question of IF I was going to be a soccer mom one day, but what color the
minivan would be and which sport we’d be driving the kids to. I wanted (and
still want) nothing more than to be a mother… and this diagnosis carried with
it the potential to kill those dreams, at least in the traditional, biological
sense of motherhood.
It
took a little time, but the more I thought about the last few months, the more
my over-achieving, stubborn, pain in the butt, “you told me it couldn’t be done
so now I’m going to make it happen” side broke through the outdated statistics
I had read about online. In the middle of this crappy situation was an incredible
hope that God had given me, along with some answers. Yes, finding out that PCOS
is a thing, I have it, and will struggle with it for the rest of my life,
SUCKS. But the people that helped me discover that have been incredible through
this whole process, and I saw so much truth in what they were teaching me about
NFP, NaPro, and finding a natural solution to a tough situation. I’ve
found hope in these women, these doctors, these NFP teachers, and learning the
truth about my body has given me the courage to say two words I need to hear
all the time on this road to dealing with PCOS:
Challenge
accepted.
(to
be continued...)
